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Monday, June 21, 2010

Illness & Invisibility

Myalgic encephalomyelitis (ME), sometimes inaccurately referred to as chronic fatigue syndrome (CFS), is a serious, complex and multi-systemic disease. It is often included in the realm of invisible illnesses because, for the most part, patients don't actually look sick.

While the symptom severity of ME varies from patient to patient, the disability levels of those more seriously afflicted have been compared to patients with MS, heart failure, cancer or even late-stage AIDS. Yet, to the unobservant eye, even the sickest of patients who are wheelchair or bed-bound will still appear otherwise healthy. At least, we appear healthier than we really are.

This, of course, can create misunderstanding, and leaves those who are perhaps less educated about the illness to erroneously assume it's not as serious as it is. The inappropriate use of and association with the name chronic fatigue syndrome further adds to this misunderstanding by belittling the illness and making it sound like we are all just a little extra sleepy. As a result, some patients can actually feel embarrassed to tell people that they have ME and will instead attempt to conceal it from others, only informing their closest friends and family members.

ME is an invisible illness in other ways as well. One of the most debilitating symptoms of this disease is what is called post exertional malaise -- a worsening of symptoms with even the most minor exertion. So, while some ME sufferers may look perfectly normal one day when engaging in some kind of activity, the strain of that activity could end up leaving the person home/bed-bound, and thus invisible, for days, weeks or even months.

In addition, it has been estimated that 25% of ME patients are fully disabled from the disease, and many of those (like myself) are homebound or completely bedridden for years on end. As such, no one sees or hears us. Often, no one beyond our immediate family and friends even knows about us.

To compound this even further, there's also the invisibility that arises from society's response to chronic illness in general. Society typically doesn't look all that well upon an illness that doesn't ultimately resolve or improve. With all of the advancements and high success rates found in modern medicine, there is little patience for an illness that has no clear answers.

There also tends to be a common-held belief within the general public that we are in control of our own health and that, with enough determination, there's nothing that can't be overcome. While this idea can be inspiring and empowering, it can also leave the sick person feeling as though they are to blame for being ill, or that somehow they are doing something wrong -- even if there are no viable treatments available to them. People generally want to hear that you are triumphing over disease, not being beaten by it. They want to hear success stories. The sick person is very keenly aware of this, and many will thus (at least to some degree) keep their suffering to themselves.

Furthermore, the sick will often keep silent on the details of their illness because they don't want to burden their loved ones, nor cause them to feel any discomfort or pain as a result of their own suffering. They want to appear strong, and they don't want to be seen as a nuisance.

Even now after having become bedbound from ME, I find I still often spend a great deal of energy trying to hide the severity of my illness from others as much as possible. I don't want people to worry or feel any discomfort. I don't want to be "that" person -- the type who is always talking about her illness, even though it has become such an all-encompassing part of my life. I want people to see me for me, not my illness. And sometimes I don't know any other way to ensure that is the case without trying to hide, as much as I can, that I'm feeling as sick as I am.

I am writing today of this latter form of invisibility because I've been thinking about it quite a bit after having recently stumbled upon a blog called Notes from Nonsuch, written by a woman named Sara who loves to garden. She also has cancer. Apparently, it's terminal.

In one particular blog entry [now removed], she writes directly and poignantly about how society in general does not deal with illness or death very well. "There is a great silence about the subject, " she says, "and a great silence imposed on the dying."

Sara goes on to describe how, as with sickness in general, it is oftentimes the dying who comfort the healthy, rather than the other way around. They tend to pretend all is fine, tell everyone not to worry, and silence their fears and complaints of bodily pain -- all this to make sure those around them suffer as little as possible. Meanwhile, this can make the patient feel as though they are ultimately dealing with their struggle largely on their own.

Sara also points out that many people will prefer to keep their support at a fairly comfortable distance. Family and friends will of course offer well-intentioned cards, flowers and teddy bears, as well as promises that they will be in their thoughts. And while this is all no doubt generous and appreciated, what many of the dying really yearn for is someone to be fully present with them. They yearn for someone to listen quietly to their story and allow them to express all the fear and pain of their experiences, and to hold their hand through the final stages of the journey.

In today's society, however, the dying are often instead sent to nursing homes and hospices, where it is not uncommon for them to end up dying alone.

Sara talks about how this also applies to some degree to the chronically ill. She writes:

Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks... After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. ...Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

...The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.

I am tremendously fortunate to have wonderful and loving parents, an absolutely amazing fiance, and some loyal and life-long friends who offer me support, comfort and assistance on a regular (if not daily) basis. I am greatly indebted to them for their kindness and compassion throughout these many years. But I, too, have regretfully seen many friends slowly either distance themselves or disappear entirely. While each will have their own various reasons for this (none for which I really blame them), I think much of it has to do with the general unease people feel about chronic illness. As Sara writes, "Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today’s society is horribly tedious. Tedious, because we are all so uncomfortable with it."

I think part of this discomfort is that people don't often know what
they are supposed to do to help, and they don't like feeling helpless.
ME also brings with it more challenges and complications in this
regard than most other illnesses, as we often can't tolerate social
visits anyway. It can be hard for some of us to even write or talk on the
phone. As a result, the interaction that comes from someone's well-intentioned
assistance can sometimes actually be more taxing than helpful. Thus, in
the case of ME, some people may keep a distance quite simply because
they assume (correctly or incorrectly) that it's in the best interest of
the patient.

And then there's the fact that people just don't know what to say after awhile. I recently read (or listened to the audio version of) the book Naked by David Sedaris. In it, he describes how illness affected his relationship with his mother after she'd been diagnosed with cancer:

I'd always been afraid of sick people, and so had my mother. It wasn’t
that we feared catching their brain aneurysm or accidentally ripping out
their IV. I think it was their fortitude that frightened us. Sick
people reminded us not of what we had, but of what we lacked. Everything
we said sounded petty and insignificant; our complaints paled in the
face of theirs, and without our complaints, there was nothing to say. My mother and I had been fine over the telephone, but now, face to face, the rules had changed. If she were to complain, she'd risk being seen as a sick complainer, the worst kind of all. If I were to do it, I might come off sounding even more selfish than I actually was. This sudden turn of events had robbed us of our common language, leaving us to exchange the same innocuous pleasantries we'd always made fun of. I wanted to stop it and so, I think, did she. But neither of us knew how.

There's no doubt that illness is awkward. It changes the dynamics of relationships, and it reminds others of just how fragile life truly is. And perhaps that's really the core of the discomfort: the idea that our health, and thus our lives, could be turned upside down in a blink of an eye, and there may be very little we could do about it. And that leads to some uncomfortable questions: Why one person and not another? What if that happened to me? Could I handle it? Could I cope?

I've had people tell me that, were they in my shoes, they don't think they could find it in themselves to go on. But the thing is, I wouldn't have thought I could handle this either. And yet, here I am. Sick or healthy, our lives are our lives and we all do what we can to deal with the hand that was dealt to us. When illness strikes, most of us find out we are a lot stronger than we ever realized.

I think the important thing to remember when someone falls ill is that they are the same person they always were. Their bodies may have declined, but they themselves remain essentially the same. In the end, the only difference between a healthy person and a sick person is that one just happened to be a bit less fortunate than the other.

Ultimately, I believe what the sick really want is merely to be recognized. We don't want to be known for being sick, but we want to be acknowledged that we are indeed fighting the fight, and we are not alone.

Laurel, you are such a gifted writer. You write with compassion for yourself and others. I so appreciate the "positive" nature of this post despite all the negative feelings/emotions (e.g. isolation, frustration) the invisibility of chronic illness can engender.

I've read a little recently about the social and cultural contexts of illness - how ill people are percieved and treated in our society. On top of dealing with illness and pain, we also deal with all the social and cultural aspects of being ill. You pinpointed a few of these ideas so well. Thanks for an articulate and eloquent post about invisibility. I'm glad your voice is out there advocating for those of us who are ill with M.E.

This is such a beautifully articulate post, Laurel. It was like reading about my own life. For many years after I got sick, I looked on it as a personal failing on my part. It was only through the help of my husband and the wonderful Buddhist teacher, Sylvia Boorstein (who has written the Foreword for my book) that I came to see that getting sick was not my fault. It was just what happened to my body.

I also don't want my relationship to the people who I'm close to to only be about my illness and, as a result, find myself hiding how sick I really feel sometimes. That's why reading your blog was so comforting to me. It's just so helpful to know that others feel and act the same way.

I agree with all of this. Even the bits that made me uncomfortable. I am definitely guilty of wanting to be that person that is seen to be strong in the face of illness. On some level, I believe that determination is a key part in recovery. You are right to remind me that it just isn't this simple.

And the power of empathy never ceases to amaze me. Acknowledgement and validation from those close to me has always made such a difference.

And as for the boredom factor. Well, I always think I'm bored with hearing myself talk about being ill, I can only imagine how it sounds to others!

Thankyou Laurel! this really hit a nerve with me..so true and so well said!seems we all have similar experiences and feelings on how cfs is perceived and responded to by others. i often feel myself in denial , trying to appear more alert and stronger than i really feel, not wanting to burden others. society encourages the unwell to just keep going and think positive, but with cfs this is not always helpful.we need acknowledgement, support and understanding.

i so agree with what you've said. since i left work and even before then i felt invisible even though people saw me because they couldn't see the illness there...now i have left because i am too ill and i feel like im not involved in the real world anymore.it does make a difference though when there is just one person there to remind you that you are still the same person... thank god for my partner who reminds me of that everyday.

I've had people tell me that, were they in my shoes, they don't think they could find it in themselves to go on.

People say that about all kinds of catastrophic things. "You are so strong." "You are a saint." "I could never do that." I think on some level they want to maintain the illusion that they have a choice. Because they couldn't handle X -- a devastating illness, taking care of a parent with Alzheimer's, the loss of a child -- X will never happen to them.

Just to echo what others are saying, a superbly written post and extremely powerful. I think it could have a wider audience. Have you thought of writing articles for magazines. This one should be required on citizenship courses.

You are right. It is so difficult to connect with the seriously ill and dying. As I enter a better phase myself I find I want to distance myself from my ill self. It would take a huge shift in emotional literacy for society to come to terms with the illness stigma. It's a form of collective denial IMHO.

A beautiful and eloquent post, and thank you for pointing me to another wonderful blog! I have been struggling with these issues lately, and one of the most frustrating things is the "I could never handle that" comments. I think cinderkeys touches near the truth of those comments- it is another way to distance oneself from a negative experience, but alienates those suffering even further. The one thing not touched on is this wonderful support network of others who are ill, who understand and can talk about these issues when we need to express our frustration and pain. This has been incredibly liberating for me, and I am only sorry that we are so spread out or unable to give each other the presence that we need. *hug*

Laurel, I read that article by Sara a couple of days ago too and it resonated so strongly with me.

It's amazing how the thoughts in your blog post match mine almost to the letter. In fact, when I was about half way through, just before you went on to say it, I was thinking: Society only likes to hear about the ill and dying when they present in a success story.

Like there was some unwritten law that life's stories have GOT to have a happy ending.

I'm not sure what we can do about all this, we can't change how society treats us NOW, but your post certainly is one important step into the right direction. All we can do is make people aware, make people TALK and think about it. They have to realize that they might be next. And even if they are not, they might benefit from learning how to treat the ill and dying anyway.

Disease and death are parts of our lives, as much as we don't want it to be, it's something we will never be able to change.

We are strong, but we are strong because we have to and we often wish we didn't have to be that strong day after day.

Thank you for telling the world, Laurel. You are a philosopher and I am sure this disease brings some very profound insights that others will never experience. It doesn't make up for what we lost, but it's something precious. In a sad way.

"...The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear."

I can't help thinking how similar society in general's reaction to chronic illness and dying is to their reaction to divorce. At least that was my experience, and I remember that it made me very, very angry. In that sense, having gone through a very ugly divorce and having had to contend with the manifestation of OTHER people's discomfort over the coming apart of my marriage, having experienced the fading away of certain friends who just didn't have it in them to extend their tolerance of my pain, I can understand in a way what you must be dealing with.

It is wonderful that technology has given us a way to be back in touch, but I am sorry that I have not been more diligent about reaching out to you. I totally understand the need to be visible, and to have others be fully present with you. Humans are challenging beings. This was a beautifully eloquent post, Laurel.

Oh Laurel, thank you for writing this because now I don't have to. You took the words right out of my foggy brain. I'm so tired of people wanting me to be a 'brave fighter' even though what that actually means is wasting energy trying to 'beat' an unbeatable enemy. Seems it's only the fighting that is important, even if there is no chance it will make me better rather than sicker. We need another vocabulary for chronic sickness and pain, one that uses words like 'truce', 'adjust' and 'survive' - not all this 'fight', 'victory' 'accepting defeat' stuff. I'm just reading a book called 'Smile or Die' in which Barbara Ehrenreich talks about her experience with breast cancer - about the pressure she ran into to be just that brave fighter, 'battling' her illness, to count the 'blessings' illness had brought her and never, ever to be a 'Debbie Downer' (to the extent that she writes about people being thrown out of support groups for 'bringing negativity'). The message from society often seems to me to be that if we can't remain decently invisible, we should at least paint on a brave smile, hug a teddy bear in a blue ribbon, and reassure people that our lives aren't so bad. Or in other words - lie, so they can feel better.

janielynx: Thanks for reminding me that I wanted to read that book. I just called a local bookstore and asked them to set aside Bright-Sided for me. (Not sure if Smile or Die is another edition or previous title, but Bright-Sided's first chapter is called "Smile or Die.")

You write so well! One of my main concerns is that I'll go out shopping or somethingand people will think I am all better, because they don't see me for the next few days were I don't leave the house.

I volunteer for a ME/CFS charity from home, and they publish a bi-monthly magazine, do you have anything like that, because I think you should send some of your blog entries in to one. You have an amazing talent!

Also, let you know I've changed my blog address. It is now: http://forgetfulgirlblog.blogspot.com/ so might be a good idea to update any of the links you have!

Thanks to all for the amazing comments... I was so touched by all your insights and stories of your experiences. The invisibility of this illness is really so multi-layered. I think in part that's what makes it so hard to endure it at times; not just the brutality of the illness itself, but the sense that so few people truly see our battle. That's why blogging and online outlets are so wonderful for those who can access them. Thanks again to everyone for your comments. I hope good news is around the corner, leading to better awareness and potential treatments, and thus making us all visible again.

Laurel--This is beautifully written and so full of the truth of debilitating chronic illness. I had goosebumps throughout and especially about the part of how minute exertion (that might be witnessed by others who think "wow, she's doing okay) can cause those us who are bed/home-bound to disappear--poof--invisible.

Two week attention span on illness...that explains a lot when a good lot of us have been at it for years and years. It helps much to understand human nature, helps us not take things personally.

In the beginning of my illness, I tried to explain it and explain it...oops, not effective. I think the judgment you talked about...that somehow if we're sick we brought it on ourselves affects us profoundly and I know for me was one reason I tried to explain too much. I don't explain it anymore, unless directly asked, and as you said, rarely talk about how I might be feeling or what physically might be happening at the time.

What wisdom Sara has and generosity in sharing it in her blog. The dying holding up those around them...doling out their own strength to help others cope. What a great gift are those that are able to be with someone who is dying, in the "real" of it. It is unusual and precious that Sara's thoughts and writing moved to an understanding of the chronically ill...as she copes with her terminal illness.

Thank you for sharing our truth so eloquently Laurel (and Sara's as well). I hope this is published beyond your blog. It is beautiful! Kerry

Hi, I enjoyed reading your blog and it's a wonderful message. I am interested in reprinting it with you as one of our guest bloggers for National Invisible Chronic Illness Awareness Week, invisibleillness.com . If you'd like to submit it just send it to http://ow.ly/2nOwN . Thanks so much! (We have a really fun outreach this year that is easy and free, leaving anonymous encouraging notes for people with invisible illness and others. Find out more at our web site!)

Lisa, I'd be honored to have this reprinted as a guest blog post on your website for Invisible Awareness Week. I submitted it via your online form after hearing from you -- please let me know if you got it okay!